Wednesday, February 11, 2009

The responses people have to special-needs kids, continued

This post is brought to you by three cups of coffee (I am so wired-tired as I type this) and residual agita over something that happened at the aquarium this weekend. There we were standing in front of the tank with the hippos, the four of us totally entertained by them, when I noticed a girl about five years old looking at Max. I glanced at him; he was drooling. "EWWWWWWWW," she said, then darted away before I could respond or pull her ponytail (OK, I wouldn't actually).

Max didn't notice. Dave didn't, either. It's always me who does, I guess because I always have my antennae up for it.

The all-time most mind-boggling thing anyone has ever said about Max is this. I was having a discussion with an older woman I know who has some pretty out-there ideas on health stuff. I mentioned that Max had a stroke at birth. "That happened because you ate too much tuna while you were pregnant, right?" she said.

I was dumbfounded. Completely, WTF dumbfounded. "No, that's not it," I said, slowly. "It was due to oxygen deprivation." And left it at that.

It's been six years since Max had his stroke. Clearly, it's going to take a lot more time for me to stop caring about reactions people have, insane or not. Maybe I always will care, I don't know.

33 comments:

See, it's funny, because for me, I have no issues with talking to the kids about Connor. I figure children are naturally curious and I can take the chance to educate them on how to interact with someone who has special needs so they don't grow up to be some of the idiot adults I run into. Said idiot adults are the ones that drive me nuts.

There are the parents who, instead of calmly educating their kids, berate them in public areas for even looking at Connor. I figure that those kids have now learned special needs = bad and scary. Wonderful.

Then there are the idiot adults sans children. I think the worst one for me was was the woman who told me that I "obviously wasn't a real Christian, because real Christians didn't have children like that. And then she actually jabbed her finger towards Connor with a look of disgust on her face like he was some sort of thing. It's a good thing I was holding Connor at the time, because otherwise I probably would have gone with my first instinct and stabbed her with my car keys. I don't think the cops would have blamed me.

I think the worst comment I've ever heard, though, was not directed towards Connor. I was approached by a woman in a coffee shop who wanted to compliment me on how well behaved Connor was and to ask me how we did it-- she had a special needs son of her own at home. We got to talking, and she told me that her own parents had the audacity to claim that her son had special needs because he was her punishment for being a bad wife and working outside the house.

"real Christians didn't have children like that."Unbelievable! Some people simply have no brain!

I have been fortunate that most people don't notice my Tourettes, but I have still had some infuriating comments made to me. The one that really got me, was when someone on the net said that people with tourettes are demon possessed and need to be exorcised! :O

Yes, the comments (like ewww!) are hurtful, even when they come from children. But I understand that children are curious, and that if we, as parents, shush them and direct them away from special needs kids we are teaching them that there is "something wrong" with special needs kids. I am not really bothered by the children. In fact, when a child *has* asked a question, I have been happy to answer it. It's so much better than when they are shushed by their parents and scurried off.

I don't know what people (adults) are thinking when they make stupid comments...maybe they are the ones who are demon possessed.

I don't know if the comments will get easier to bear, or if you will just come to pity people that haven't known the beauty of a special needs child.

I am so right there with you. I am always the ones to notice the whackadoodles and lookie-loos, as I call them in my head. And the pity eyes. I have taken the approach that I just love on Addison all the more, and maybe the idiots will realize that she's perfect in my eyes. I try to be patient with the kids. We haven't gotten too much of that yet. But I know it'll come. And I don't know if it'll ever be any easier.

i always chalk odd comments up to people just not knowing what to say....so just keep it zipped!!!! people used to stare at aaron all the time and ask what was wrong with him...and when i gave the answer, they were horrified! give me a break..shit happens!! i think moms always will notice the stares/glares/comments because we want to protect and shield our children from the ugly world.

I've had more problems with adults than children, so far. Before Emmett's hair came in and the shunt was very obvious, children would ask about it. I was shocked by how many parents reprimanded their child for being curious.

I don't which is worse - when people stare or when they act like he's invisible. I wish more people would just ask about him.

I've been blessed to see some amazing interactions between kids. My little sister is 14, and in her math class there's a boy with autism. My mom used to teach him and she told my sister to go say hi. She came home the next day and said "I said hi to Paul and his aide told him to say hi back but he didn't. We'll try again tomorrow. I see why you love him"

I work at a special needs camp, and I love to see the kids interact. I have one boy with aspergers who adores a child with autism who is essentially non verbal. He goes to see the little boy every day to say hi. and if the little boy doesn't say hi back then they high five. They don't need words to be friends

You will always care what people think--that's the mother in you. Even when your child is twenty, thirty, forty or more, you will still care. Even if your child grows up and turns out to be a royal pain, is unaffectionate, or is downright mean, you'll still care.

It's "that thing" that happens to mothers. You just can't not care, no matter how lousy or difficult your kids might be (but of course, no one here has difficult kids! That's those "other" people!).

Ughh...something about having to "explain" my daughter to others can really rub me the wrong way.

For the most part we're lucky because most people don't realize there's anything different about Kasia unless they happen to ask how old she is. Ahhhh...then they all get that same weird look in their face, start stammering nonsense and giving me the pity eyes.

On our first day of parent & tot swimming classes, another mom who had dared ask me the Forbidden-Age-Question, responded by presuming that Kasia had Downs Syndrome (which she doesn't) and firing off 20 questions including "what's wrong with her" and "is she going to be okay or.....". OR WHAT?????

It felt like she had just stabbed me or something! I didn't even know how to respond so I turned around and walked away. That incident almost caused me to quit the swimming classes but in the end, I realized my daughter was more important to me than a stupid stranger.

All the previous comments were excellent...I can relate to all of them.

OMG! I am so with you on this topic. I get so angry and frustrated, and yep I'm the one to always notice it too. I've posted about it many a times with peoples stupid comments, or looks. Most times I just blow it off, but there are times where I just let it fly. If I'm with my older daughter (15) and we are with Daniel and someone keeps eyeballing him continously I will have her push Daniel and walk a different way, THEN I will say something crappy. But there have been times where I was so taken aback by it that I just stammered and couldn't get anything out. Then I kick myself all day to things I could have said. Some people say I am "looking" for it. I don't think I am. When you stare at him and then turn to someone else and say something....you're going to get an earful. I've always thought about getting a shirt that says some remark on it. Actually we're in the process of doing it....I'll have to let you know what they are!! Stupid People, stupid comments, suck!

I just found out the other day that the little blind-deaf boy who attends out local school system was interviewed by our paper... fine, wonderful article!!! It was the same reporter that interviewed me for our upcoming article about blind judo (wonderful lady).

... the Philadelphia Inquirer got hold of the story too, and sent there own reporter down to interview the deaf-blind boy... and her first words to his mother "Was he abused as a child, is that what caused his blindness, was he beaten?" - mom told the IQ reporter to get out. Some peopler are total asses, and the media does not help!

As for me, just know that I try to educate my students about kids with special needs...And that is why we're doing the article about blind judo. - Hang in there moms... Your day will come...

It's the looks of pity that hit me the hardest. In my mind, there's no reason to be sad for--or about--my daughter. People wouldn't look at any of my other children and pity them (or me for being their mom)...it just reminds me how many people don't "get" my daughter and what she may face in the future.

That said, I know many people do not know what to say, and some things come out that I'm sure they kick themselves for later. I try not to put to much weight on what others--especially those who don't know us--think about Bridget or the rest of us. There are too many positive (or otherwise pressing) things to focus on in our lives...we don't need to waste time thinking about the negative.

p.s. I once had a woman stop me and ask me if I took my prenatal vitamins. She explained she was just wondering because she was considering having more kids, and "you know, things can happen". Oh my, there are no words for that one...

Many people find it neccessary to explain why some children have disabilities and other do not. Saying crazy stuff about God's revenge and tuna helps to make sense of things. If they can't explain it then that means that it's random and that it might even happen to them. Horror!

I'm not quite at the point where people stare, but I hope that it doesn't make me too crazy.

I am so aware of what people are percieving Elizabeth to be like and I am fairly defensive. It is amazing how early kids pick up on differences (or maybe it is my oversensivity) we were at the McDonalds playland and Elizabeth was happily singing as she could hear an echo and 2 little boys no older than 4 began to call her 'looney'. Of course I am the only one who had noticed as all the other kids were left unattended. It floors me at such a young age kids are already being bullies. It took most of my inner strength not to bank their blond heads together. Most often you look back and the parents are no better they are either too self absorbed to notice others challenges or they themselves are syaing inappropriate things. The worst comment I got was at our neighourhood block party and someone made a joke that we spiked Elizabeth's drink as she staggers, I walked away and left Dad to deal with that one.

Tuna!?! I think I would have started laughing. Once years ago a little girl came up to my sister who had my daughter Regan out playing in the park. She asked her "what's wrong with that girl's legs?"...and my sister reponded....."well she was born not being able to walk on them without her walker, just like you were born fat."

I told her she can't respond to people like that (but inside i giggled) I wish I had the nerve to just say stuff back like that.

Wow, I have loved reading all these comments as much as the post. Thanks for raising the topic again Ellen!

Some real shockers here! Can't believe the tuna/Christian/bad parent comments....and also hate the 'Is he/she going to be OK?' comment mostly because I just don't know what that means!!

Christine, your sister's comment is a classic. Gave me the giggles ;-).

I think that I definitely feel different about adult vs kids dumb comments. I think that's because of where they come from. The kids are mostly naively curious, surprised or just repeating what their parents have said.

The parents and other adults, on the other hand, I think should just know better.

Worst for me was (as I posted) the recent lady in charge of placing aides with children in kindergartens who told me the funding for such aides was...... 'a bonus'. Yippee!

honestly, I think I'm going to need some therapy before LilB gets any older. He still looks pretty young so most don't notice he's different. Some people will ask how old he is, but I've never even seen them bat an eye when I answer. I'm afraid of what my responses will be to questions I know will be asked.I'm STILL angry about when he was first born and they were trying to figure out what was wrong... they accused me of taking drugs and when I told them I hadn't, they came to me later and said, well, we did a UA on him and he was clean. DUHI think adults will be the worst because I can just tell myself that kids don't know any better.

I can personally attest that it is not only special-needs kids... I clearly remember being 6' tall at 12 years old, and people staring at me while my mother had her antennae up and noticed just as you do with Max. Once in Atlantic City, walking along the boardwalk, she finally broke and said, "look at the woman stare at my daughter as if she's a freak, how rude and ignorant...!" I don't recall any expletives, but no doubt they were on her mind.

Now even as an adult woman, fully grown at 6'4", the stares, comments, looks, snickers continue. Just yesterday I stepped off my elevator and heard the 2 average height guys say, "boy is she tall!"

For the most part, the attention is positive, but when it's not, I remember that we all can't be civilised, well-mannered and enlightened persons!!! :)

People like to live in their comfort zones, too bad, because I would never want to be in that zone :) Life is just so much more interesting and rewarding... give Max and Sabrina a hug for me!!!

I doubt it's the same for everyone, but I've come to accept the fact that for myself and my family, comments like this are always going to hurt on some level. I've stopped beating myself up over the expectation that someday I will be immune to the wounds that careless or hateful words inflict. And now that I think of it, it's probably a good thing -- to not become calloused to the absence of kindness. In my family, we grieve these times as they come, pick ourselves up and move on. And my heart breaks knowing your lovely family knows this same grief.

Jess, that "not a real Christian" remark is beyond mind-boggling. So is the fact that anyone could ever say a person "got" a special-needs child because they weren't a good person. As if a special-needs child is a punishment. AS IF.

Felicia and Andrea, bingo, I hadn't thought of it till you said it but, yes, I have an overly strong protective instinct when it comes to Max, who cannot really fend for himself. Yet. Watch out, world, one of these days he's going to up and give someone the middle finger! Wouldn't THAT be quite the OT feat!!!!!!!

Julia and Melanie, I agree, the staring can be worse than just speaking up. Staring seems like something you do at a circus freak show. These are children we're talking about. The pity stare can be even harder to take for some, I know, but for me the gawking is worse.

Melanie, can't WAIT to see what sort of t-shirt you come up with!!!!

Rich, are you sure about that story? The Philadelphia Inquirer is a good paper. It is hard to believe a reporter would be so ignorant.

Shannon, YEAH!!!!

Katy, I know, people try to make "sense" of things with crazy talk. It is too bad they have no clue how upsetting they can be.

Christine, welcome. PRICELESS comment from your sister.

Dianne and Miss Burb, maybe I should be more forgiving with kids who say rude things, they are just kids (unlike grownups, who ought to know better). As Jess and Kristen say, we shouldn't shush kids or make them feel ashamed for their reactions, but educate them. I have to remember that, I don't want to make kids fear Max even more. But still, I feel like pulling ponytails. I need more patience/goodwill/saintlike qualities/whatever. Like Angi, when kids say stupid stuff—like your special-needs child is looney (ARGH!!!)—I get defensive. I will try to keep all the wise words here in mind next time something like this happens.

DelFav, you're so right, people notice anything the least bit different about other people—it's not just individuals with special needs who provoke comments.

I have SO much to say on this topic, but I will try and keep this fairly short. I have enjoyed reading what everyone has written. This is such a tricky subject. I totally agree that it is important to remember that most of the looks and comments we get are based out of curiosity or just plain lack of knowledge, People really DON"T understand. And when people don't understand something, they often jump to conclusions, and automatically write it off as "strange." I would rather people ask me questions about myself or my students, than operate out of fear and ignorance. That always leads to trouble...

People who see others with disabilities are usually a little shocked. So I try to calm the shock my giving a response as if my CP is no big deal. I hope that instead of having to give big speeches, I can just go through my life quietly, simply letting my everyday actions speak for themselves. WE know that disabilities are not synonymous with negativity. But other people don't.

All of us here have a unique opportunity to break down all of the ignorance that exists around the topic of disability, by the way WE respond to the looks, and the way we answer all of the stupid questions that come our way.

I try hard to answer the questions in a caring, open, and relaxed manner so that I don't breed more fear. Does that make sense? I'll admit though, I have felt definite waves of anger, especially when I see another kid being mean to one of my students.

And lastly, thinking back to when I was young.... before I could walk. I remember a peer calling me a "worm" because I was crawling. My sister, got angry at the boy and yelled at him. I know you might think that is sweet, and it's true, it was wonderful of her to defend me. But, it really affected me because the boy got angry and defensive and he was a bully to me for a long time afterwards because he was scared. That's one of the main reasons why I think a nonchalant, understanding explanation gets better results than anger.

Oh, Ellen...this is such a big fear of mine. I have had a bunch of crack-pots say things to me about Gavin, but my BIGGEST fear is having to answer the inevitable question, "Mommy, why am I different?" from Gavin. *sigh* It makes me cry to even think about it. And now I'll have to also answer Brian's questions about his big brother. I was once in the grocery store and the strange checkout lady that wore WAY too much makeup was admiring Gavin and was leaning in to touch him. I said nicely, "Please don't touch his hands...he's medically fragile and his hands go right in his mouth". She said, "Hhmph. You should be happy anyone's admiring your kid."Grr....BEE-ATCH.kate.www.caringbridge.org/visit/gavinleong

Hi, I'm so glad I found your blog.You and your readers describe a lot of the emotions and situations I'm going through. My son was diagnosed with microcephaly at birth and, four years later, is facing certain developmental challenges, and is undergoing different kinds of therapy.

We haven't faced any negative reactions, probably because my son's issues are quite mild and his appearance is pretty "average" (whatever that means). I suppose kids get nasty only a little bit later, say, at 5-6-7 years old? I'm dreading next fall when he'll have to start "official" preschool...

I know, the comments can cut you like a knife, can't they? I do get annoyed by the comments from kids, but more so when/if their parents don't do anything to correct them. Daniel has been on the receiving end and the giving end of it. Last year, we were in the brace clinic when a little girl of about seven started drooling profusely. Daniel noticed and said, "Eww, that's gross!" I took him aside and had a talk with him about how everyone has something that's difficult for them (I think at that time, he still thought that all kids wore a brace on their left leg just like him), and that it's not nice to make comments like that. He does sometimes question me when he sees someone in a wheelchair or walker. Mostly he'll ask me if they had a stroke just like him, but that's the extent of the conversation.I've had people blame the stroke on me, too! One even asked if I did drugs while pregnant - the nerve of him, especially since I even gave up my beloved coffee during pregnancy. I don't mind when people ask questions, as long as they do so in a tactful way. "What can cause pediatric stroke?" sounds a lot better than "Did you do drugs while you were pregnant?"Finally, there's the W - word. It angers me to no end when people ask what's "wrong" with Daniel. What's worse is when they do it right in front of him - talk about a shock to his 4 - year - old self - esteem. I remember when Daniel was a young toddler, not long after he learned to walk, and we were out shopping one day. I was practically walking on clouds, I was so happy that my baby could finally walk. Never mind that he was dragging his left foot a bit. Well, a grown man walked up, gawked at my beautiful boy, and loudly demanded, "What's WRONG with him?" Let's just say that my response was a little less than polite.We've come a long way in the past 50 years when it comes to disability awareness, but we certainly still have a long way to go.

I haven't had to deal with much yet but have no doubt that I will in the future. I already feel pretty defensive and am always on the look out anticipating someone's stupid questions or comments. I fear my reaction - I fear that it might be too strong or maybe not strong enough. I don't think it will be anything I'll ever get used to though...

I feel like "Bird" hit the nail on the head when they said "If they can't explain it then that means that it's random and that it might even happen to them. Horror!"

I have only had a few comments so far. I'm sure more will come. I share ideas with some of the other commenters that questions from little kids are much more welcome than many questions I've heard from adults.

I've also heard some people say that if you say a comment back to defend your child that you are wrong because you've missed an opportunity to spread awareness. I have to say that I don't think it is my job to spread awareness 100% of the time. I don't have time to anyhow.

This post and all the responses were very interesting. It brought back so many memories from when my kids were young. I tried to remind myself that when kids stared or asked a question, they were usually just curious. "Why does he walk like that? What are those things on his legs? What's wrong with her?" I usually answered, "His muscles don't work quite right," or something like that. I do admit I had a harder time when it was more than one kid and they were making fun of my kids.

But one of my all-time favorite stories happened when my son Gabriel was in about second or third grade. At the time he had been diagnosed with Tourettes and had several facial tics. We were standing in line for a ride at Six Flags. You know how it is: you wind up and down the aisles and keep passing the same people in line. Well, I noticed this boy about Gabriel's age staring at him every time we passed. I started feeling anxious about it and finally positioned myself between the boy and Gabriel so as to block his view. Just at that moment, Gabriel leaned over to me and whispered, "See that boy over there? He's got an eye problem. He keeps staring." What a wonderful perspective...in Gabriel's mind, it was the other boy who had a problem, not him!

Ellen, thanks for visiting my blog. I think Max is a great kid, and he reminds me of my son Marcus, who also has right hemiplegia. (That's Marcus climbing the monkey bars in my last blog post...one of my favorite pics because it shows his determination.)